Epilepsy lived experience – hear the story of someone with Epilepsy

In this edition, we hear about how Epilepsy affected Iain and Diane from our Epilepsy and our Understanding Neurology courses.

So I have nocturnal epilepsy and the sort of seizures I have are tonic-clonic seizures, which probably is what people first think of in terms of epilepsy, it’s the full job, if you like, unconscious body jerking, biting tongue, and that sort of thing. But with nocturnal seizures, it doesn’t mean that it always happens at night, it means it happens when I’m asleep.

He doesn’t know anything about it. So it’s down to me to assess what we are on if it’s going to be very severe, I’ll have to time him, see if he’s going to get into further seizures, if he is that becomes a life-threatening situation, then you have to ring and get ambulances involved, etcetera. But sometimes we don’t have that but sometimes it is like that. And they say it’s quite scary if you don’t see it. If you’ve never seen it, it is very scary. And even though he’s being up and dealing with it for nine years now, it’s still very scary.

For me on a day-to-day level, it doesn’t affect me too much. Really, the only thing is avoiding myself getting too tired because that might be one trigger as well, and possibly a rising temperature might also have an effect on it, but from a day-to-day level, I think actually it’s more difficult for the carer.

The only thing that I’ve spotted now we have worked out because you never know is tiredness. He’s feeling particularly tired and he looked particularly tired, I’m like, “Are you alright?” He says, “I feel a bit tired.” And also there were other triggers for my husband is a high temperature, so the last few have been due to a chest infection and a severe cold, but they set off the very, very severe ones, which is why I end up getting the ambulance. So those are the ones we need to worry about. So I just keep an eye on him, and if he feels a bit we stop, paracetamol to take the temperature down. But most of the time he doesn’t like taking tablets unless he has to. So we just keep an eye.

I don’t know anything about it. I think when you’re in it, you are the one that’s affected by it. Actually, it’s less of a worry when you’re suffering it than someone actually seeing it and having to deal with it as well. I know nothing about it until I come around.

So most of the time he’s in bed when it happens. So the convulsions are quite severe, so sometimes he’s ended up getting out of bed. His body is pushed out of bed. And he has ended up hurting himself on the furniture. So he smacked his head on the furniture, dislocate his shoulder. So I’m sort of trying to make sure he’s not in any way moving things around trying to get pillows behind him.

And as I come around if you can imagine, it’s literally a nightmare. When the paramedics have been called, I’m in bed, I’m aware of that and I have these people trying to attack me, from my side of it. It’s literally like being in a nightmare, so it’s very frightening.

For Ian, when we have got the ambulance people in, it’s actually scary for both of us because you’ve got strange people walking around your house and they are trying to make him feel comfortable, they are telling me to keep him comfortable and ’cause he’s not always responding obviously straight away, so they are waiting sometimes for him to come out of whatever seizures he’s been in and then they just assess him, check him, ask me to keep talking to him. Sometimes it’s really scary. Suddenly he wakes up and he got all these people looking at you in your own house and he says, “What’s going on, what’s going on?” And I explain that he’s had a seizure. He’s not always going in ’cause obviously, he’s still coming around really. So he’s talking back to me but he’s not really sure what’s going on. Then they wait a little bit, test him for oxygen levels which he has this thing they put on his face, the oxygen mask, which he hates. So we have a fight over that every time, and they go, “Oh, he’s very uncooperative, isn’t he?” And that happens every time. He is uncooperative because he’s got this thing coming up his face, why would you think that is normal when you’ve got someone. But for them, they are trying to assess his oxygen level to make sure he’s okay, and that’s what we always end up worrying about because his oxygen level has dropped quite a lot.

Once I come around as I think most people are affected with seizures, all I want to do is sleep, be left alone, let me sleep.

Well I would like the ambulance crew to moderate sometimes is their language ’cause they say, “As he had a fit?” And we don’t like to use that term because it doesn’t feel like it’s the right thing. It’s a seizure. It affects his heart, it affects lots of his body. And when people say, “Oh he’s having a hissy fit.” It denigrates what this poor person is going through. So, the language would quite love them to moderate the language ’cause they say to me, “How many fits as he had?” And I go, “He’s had three seizures.” That goes past them because they are just trying to deal with it, so it’s a bit frustrating with that.

But generally, I find that the paramedics are often very good. And actually sometimes when I’m handed over to the hospital, the care and attention I get from the hospital is not as good as I get from the paramedics.

We are very fortunate we regard ourselves as very fortunate because they don’t happen very often. They are quite severe when they do happen, which is what causes some issues for us, but most of the time living with him it’s the memory problems that are partly caused by the medication, but also partly by the seizures because if you have a certain amount of seizures, often it affects your memory, and because they are nocturnal seizures we have been told that affects your memory anyway, because that’s when your brain’s doing all the storing and ready, so, therefore, his memory has got a lot worse over the years and we have to take that into account.

Well, very initially, of course, you lose your driving license. Again, I’m lucky because it’s nocturnal after a certain number of years, even if I get seizures, I can still drive. But there’s something psychologically quite difficult about that. I understand it completely and actually the laws on driving licenses, etcetera, I think are very reasonable and fair. But psychologically, you still feel like you’re being punished.

When you start talking about it, there are all people who suddenly say, “Oh yeah, my sister has this.” Or, “My nephew has this.” But because they’re so many different types of epilepsy, it’s not the same thing. So there’s a woman I used to work with and she knew when her seizures were going to come, they were quite gentle, she’d sit on the chair, find somewhere, so people think, “Oh, that’s all right because you know when they are coming.” And no, we don’t know.

How people think of you particularly close family, strangely enough, there’s socially, some very a lack of understanding of what epilepsy is and the causes of epilepsy which certainly for some closer people for family, they actually find it difficult themselves to accept and what a lot of people try and do is think, well what is the cause? And they find causes for it and so, for instance, I’ve been told or I’m asked quite a lot and particularly in work, “Is it caused by stress?” That’s the first thing that people ask. Well, no, is the answer. My consultant has confirmed it’s not a stress-related thing. So people try and project their own causes on it.

You meet people and try and explain it to them, but unless they actually deal with it, I don’t think there’s much of a concept of what it actually means for your family.

It’s very much because there’s no cure because people don’t know what the causes of epilepsy. It’s a case of just finding drugs and I understand that they don’t even know how the drugs work, or why they work either. So that’s another issue is the unknown.

When Ian was first diagnosed there was absolutely no help at all. They just said to him, “You’ve got epilepsy.” And so we tried to ask questions and we were just said, “Oh my.” I asked them, “Well what do I do?” “Dial 999.” “Oh, that’s it is it?” “Yeah, that’s the advice.”

When you’re first diagnosed, it seems like some tablets are thrown at you and you go off and have to deal with it. So, having someone there that could give you both practical support in terms of how to perhaps make reasonable adjustments at home, but also help you understand what you’re going through as well. And certainly, the experience I had initially is the consultant didn’t seem to be able to see it from the patient’s point of view.

So I was a bit concerned thinking, “Right, well, what do I do then? Because I don’t know. This is new to me.” And for Ian obviously, it’s brand new, and we are both having to work ahead trend, a new condition that we hadn’t really heard of. Nobody in my family had suffered from it. No one in Ian’s family had suffered from it. So because you haven’t come into contact, you don’t know who to ask. And then it was all a bit confusing for a while. We just looked at books, read the books, but it was a little bit distressing not being able to speak to anyone, and it took us four years to walk past a stand which happened to be an event, we talked about epilepsy and it turned out to be a support group which Ian joined later.

I would say probably one of the main things is to listen to what the sufferer is saying. There are so many different types of epilepsy. I think there are 40 odd types of epilepsy. And again, what often happens, even with medical professionals is they make certain assumptions of what epilepsy is. Epilepsy is simply a generic term.

Learn more on courses like our understanding neurology course. Visit www.protrainings.uk, email support@protrainings.uk or call 01206 805359.

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